Thursday, September 18, 2014
Wednesday, September 17, 2014
When Ms Burmeister filed her lawsuit against the HHS and NIH back in January this year she accused federal administrators of playing a "secrecy game".
"Patients with this disease have been harmed, dismissed, ridiculed, abused, neglected and completely abandoned by the government, and as a result, by the medical profession, insurance companies, friends, family, neighbors, colleagues; in other words, by society at large," blogged Ms Burmeister at the time.
"This is largely due to the unscientific government-sponsored case definitions, another one of which was ordered from the IOM, which is the issue at the heart of my FOIA request.
Wednesday, September 10, 2014
|September 10th, 2014|
Interview: Jennifer Brea Talks About Obstacles, Adjustments, and Inspiration
Jennifer Brea reveals her inspiration for creating the film, Canary in a Coal Mine, and shares some of the obstacles she has faced in her ongoing battle with ME/CFS. Read More »
Tuesday, September 2, 2014
Now a recent study demonstrates an important way that this is so.
Reduced levels of BDNF – described as a nerve repair agent – were recently found in Chronic Fatigue Syndrome and multiple sclerosis. The levels found – less 25% of normal – were stunningly low, and this suggested that neuron functioning was taking a real hit in both these disorders. Given the nerve damage found in MS, that result was expected for MS – but not in ME/CFS.
A recent Fibromyalgia BDNF study seems to portray a very different disorder.
Monday, September 1, 2014
Georgetown in DC needs civilians with #CFS to get in study...they need 72 participants.......Exercise and Brain Scan
The Chronic Complex Diseases Study Purpose: to understand Chronic Fatigue Syndrome (CFS) Who: Adults (over 18 years old) with and without CFS are invited to participate. What: Subjects will have magnetic resonance imaging (MRI) brain scans then bicycle exercise tests. They will stay overnight, then have a 2nd exercise test and MRI the next day. Where: Clinical Research Unit, Georgetown University, Washington D.C. Compensation for time and travel will be paid. Contacts: Telephone 202-687-8231, FAX 202-687-9886 E-mail:firstname.lastname@example.org or email@example.com
Wednesday, August 27, 2014
"while all charities have overheads, some deliver a much, much larger proportion of the dollars they receive to where it can make a difference than others.
However, high profile events like the ice-bucket challenge tend to disguise how little relatively wealthy people actually give away on average. If we spent as much on fighting disease as we do on bottled water to pick just one example, we'd have beaten most of these long ago."
Read more at http://www.iflscience.com/health-and-medicine/infographic-shows-differences-between-diseases-we-donate-and-diseases-kill-us#XEE37d69SO7mEX8e.99
Tuesday, August 12, 2014
Authors retract highly cited XMRV-prostate cancer link paper from PNAS
Written by Ivan Oransky
August 12, 2014 at 8:33 am
Retraction Watch readers may recall that nearly two years ago, an
editor at PLOS declared the scientific story of a link between XMRV,
aka xenotropic murine leukemia-related virus, and prostate cancer
over, saying that a retraction from PLOS Pathogens was the "final
chapter." (That retraction led to an apology from the journal about
how it was handled.)
Perhaps, however, there is an epilogue. This week, a group of authors
who published a highly cited 2009 study in the Proceedings of the
National Academy of Sciences (PNAS) making the same link retracted it.
Here's the notice, signed by all five authors:
"Retraction for "XMRV is present in malignant prostatic epithelium and
is associated with prostate cancer, especially high-grade tumors," by
Robert Schlaberg, Daniel J. Choe, Kristy R. Brown, Harshwardhan M.
Thaker, and Ila R. Singh, which appeared in issue 38, September 22,
2009, of Proc Natl Acad Sci USA (106:16351–16356; first published
September 8, 2009; 10.1073/pnas.0906922106).
The authors wish to note, "Due to work performed in other labs, we now
know that some conclusions from our paper on xenotropic murine
leukemia virus-related virus (XMRV) cannot be true. However, other
findings that we reported in that paper still remain valid.
"XMRV was first described in 2006 as a new retrovirus detected in
prostate cancer tissues (1). We replicated this finding, identifying
XMRV sequences by PCR from an independent set of prostate cancer
samples. Other groups also detected XMRV sequences in prostate cancers
by PCR (2, 3). However, subsequent studies showed that XMRV was in
fact generated by the recombination of two endogenous murine
retroviruses when a prostate cancer was passaged in nude mice to
generate the 22Rv1 cell line (4). The detection of XMRV DNA in various
human tissues by PCR has been attributed to contamination of
commercially available reagents with mouse DNA (5).This explanation is
the most likely for the PCR findings we reported.
"The immunohistochemical staining with anti-XMRV antiserum that we
reported in our PNAS publication was most likely due to
cross-reactivity of our antiserum with a protein present almost
exclusively in malignant prostatic epithelial cells. We are in the
process of identifying this cross-reactive protein.
"We wish to note that other parts of our paper remain valid. We
created a full-length infectious clone that replicated efficiently in
a human prostate cancer cell line. We used transmission electron
microscopy to analyze the XMRV particles produced and showed that
their morphology was identical to type-C retroviruses. Using gel
electrophoresis and Western blotting, we determined the molecular
weights of all the structural and nonstructural proteins of XMRV. Such
detailed characterization of a xenotropic virus, including electron
microscopy, has not, to our knowledge, been performed elsewhere. This
characterization still remains correct and is relevant to the
understanding of other wildtype xenotropic viruses.
"Taking all of this information together, we would like to retract our
paper; specifically, the findings reported in Figs. 2–4 and Fig. S1
are no longer valid and we no longer believe that XMRV is associated
with prostate cancer.""
The paper has been cited 199 times, according to Thomson Scientific's
Web of Knowledge. The first reference in the retraction is to the
retracted 2012 PLOS Pathogens study.
A Science paper claiming a link between XMRV and chronic fatigue
syndrome (CFS) was retracted in 2011.